It all starts from when those 2 little lines pop up on a stick – you’re pregnant! (You even go buy a few more pregnancy tests just to make sure!)

You call and make your midwife appointment, you go on google and search everything and anything baby related, you join baby groups on Facebook and a birth board online for the date you are due.

You do everything you can to hide the fact you have started growing a tiny little human until that first scan.

You’re 12 weeks pregnant and you see your baby on the screen at your ultrasound for the very first time and feel emotions you have never felt before and plan how you’re going to share the news with all your friends and family.

You take all the right supplements and eat healthy along with drinking plenty of water (meaning plenty of extra toilet trips!) you google some more and start talking with your midwife of how you want to give birth, you dream of a minimum pain relief water birth while contemplating whether to breast or bottle feed.

No one mentions that you could have your baby early and not once does that thought enter your mind.

You’re not prepared, you haven’t packed a bag!

You’re getting rushed in for an emergency c section or getting steroid injections to try and give your baby the best chance possible at survival, the words “best chance at survival” words you never thought you would hear when thinking of your unborn child.

You have professionals surrounding you with so much medical equipment beeping while you’re being asked to sign something that you don’t have a minute to read.

And it’s all over in a minute.

Your baby is rushed away.

You’re put into a different room.

Suddenly it’s gone quiet…

You’re in pain and you don’t know where your baby is or if he’s even ok, you didn’t hear him cry when he came out so is he ok!?

Or did you hear him cry? You can’t quite remember, it was over so fast that it’s all a blur.

You think back to how you had seen social media posts telling you that yes, it’s painful but when your baby is placed on your chest it’s all forgotten but you didn’t get that…

Finally, someone comes to see you but they can’t tell you if your baby is ok, just that he is in intensive care and that’s all they can say right now.

But you HAVE to express. You may have never wanted to breastfeed but for your baby’s best chance at survival you have to try and get that precious colostrum for him.

There it is again, “baby’s best chance of survival”

You finally get to see your baby hours later but you’ll have never seen anything like it before in your life. This isn’t a baby surely?

He’s too small, there’s not an ounce of fat on him, his skin looks different and you can’t even see his face for breathing equipment.

Can you have a cuddle? Not yet…

Day 2, can you have a cuddle? Not yet…

There are things you can do to help though, trying to express as much milk as you can being the main one, even though your baby probably isn’t even having any yet down that tiny little tube…

You go home to an empty house, a quiet house, your hospital bag maybe half packed on the floor and a few baby bits that you had started to buy.

No matter how much you try to sleep, every time you close your eyes all you can hear is the beeping from all the machines surrounding your baby, plus you have an alarm set every 3 hours day and night to remind you to get up and stick a machine on you to try get some milk for your baby.

You feel guilt, sadness and almost as if the experience of having a new-born has been taken away from you, and then you feel more guilt again for feeling that way.

The hospital becomes your second home, where you spend more time at than your actual home, there’s nothing you can do there other than sit by your baby and doing his cares when it’s time.

When people think about premature babies they think of babies that are super cute because they are tiny!

The reality is so much different, there is a reason they are supposed to be in for 40 weeks and when they come earlier than they are supposed to they aren’t fully developed, inside and out.

There are so many difficulties and challenges that those tiny little bodies need to go through in order to survive.

When people say their premature baby is a fighter, they are absolutely right. They have been through so much without even knowing it themselves.

If your friend, family member or maybe even just someone on your online baby group has just had their baby prematurely, they might say they are fine and they don’t need anything but let me tell you right now, they are probably not fine, they need your support, they need your understanding, patience…

If you’re looking for a gift to give then hand moisturiser is a good one! As a parent of a preemie, you will never put so much hand sanitiser on your hands in your life!

Even just a hug (real or virtual!) to know you’re there for them if they need you goes a long way

A couple of weeks ago we were at our local hospital at an appointment and he needed his nappy changed.

I found a disabled toilet but there wasn’t a changing station in it.

I asked two members of staff if there was anywhere suitable to change my son’s nappy – they both pointed to the toilet I had found.

I told them that there was not a changing station or anywhere suitable in this toilet for him to lie down so that I could change his nappy and asked, “Is there was somewhere else?”

One of them said, “I’m sorry I don’t know and I’m with a patient right now so I need to go.”

The other person I asked said that this was the only option available for us…

NO ONE should have to change their child on a dirty toilet floor – there should definitely be better facilities than this!?

If there was already, then, ALL members of staff should know where they are so that they can direct people.

So, I posted this on Wilson’s social media pages and it got a few shares.

It was on one of these shares that someone commented saying these words exactly…

“Needed his what changing!? He looks about 7!!!”

My son is 2 years old, but that’s not the point…

It was quickly pointed out to him that he had a disability to which he replied “Oh, my bad.”

Excuse me?!

Are you as annoyed as I am right now?

Because whether he has a disability or not, whether he is 2, 7 or 70 why should it matter that he wears a nappy?

The point I was trying to make was that we need more changing places!

Even though most of us with children that have additional needs already know this.

But it made me realise that not only do we need to raise awareness about the lack of changing places but, also, that there are children past the age of 3 that still wear a nappy!

My son is still young but since he has cerebral palsy effecting all 4 limbs and can’t sit unsupported, I have no idea how long he will be in nappies for, my daughter had been potty trained by the time she was the age my son is at now.

Is that a problem?

Absolutely not!

Should I be worried or concerned?

Well, believe me when I say I have bigger things to be concerned about than whether or not my son is out of nappies!

It’s upsetting that people are so judgemental and this is why we need to raise the awareness, to educate people.

There are some people who may have never been with or known someone with a disability – they would genuinely not know about some situations we find ourselves in with our children!

This is why social media is great!

People are scared of the unknown so let’s make the unknown known.

Let’s educate.

Let’s make people aware.

Let’s make a change.

For this blog post I’m going to need the readers to use their imagination…

Just close your eyes and think…

You’re 2 and a half years old, your mind right now is like a sponge, taking everything in and all you want to do is explore the world!

“What’s that over there”

“what does that do”

“I need to go do that!”

“Mummy’s going over there, I’m going to see what she’s doing” but wait a minute…

You can’t, you know what you want to do so why is your body stopping you?

You see everyone else walking about, picking up toys and exploring the environment around them why can’t you do that?

You may be somewhere new and just want to run and hide behind mummy but you can’t.

You become confused, upset, frustrated.

That is the everyday reality for little Wilson.

His mind works in the same way as any other toddler, he can talk and has an amazing understanding of everything but physically isn’t able to sit up, crawl, move around, walk and even struggles with his hands with some tasks, it’s the one part of his brain that unfortunately became damaged when he was born prematurely.

Anyone who has a child (especially a boy!) will know that they get into EVERYTHING, they will turn your house upside down.

Sometimes you’ll get a bit annoyed with this and lose your patience after saying “please don’t do that!” for the 100th time that day, but imagine your child couldn’t do any of that…

You probably haven’t ever thought about it, you’ve never had to!

And I’ll be honest, I had genuinely never really heard of Cerebral Palsy before Wilson was diagnosed, I had never seen a child not being able to walk when they should be able to so I never even realised it was an issue for some!

The reality is that unfortunately it is, for thousands of children, Wilson being just one of them.

However, saying all this doesn’t mean I want people feeling sorry for my son, or feeling sorry for me or the people around him, because that is THE LAST thing I want.

What I want is for my son to be happy and despite all the difficulties he faces he IS happy and I’ll do everything in my power to ensure he always is.

Yes, he can get frustrated but I’ve always tried to not let him know that he is any different from anyone else his age.

He does know, I can tell he does but has never once questioned it to me.

We have been lucky enough to discover various different pieces of equipment to ensure he never gets left out of any activity that his big sister or friends at nursery are doing and things might take a bit longer to do but we always manage to find a way around it!

Let’s just say my arm muscles are very impressive from all the carrying around, but for as long as I physically can, I will run around the park with him chasing his big sister, I’ll carry him down to the kitchen so we can bake cakes, I’ll jump him up and down on the bouncy castle and I’ll take his splints and footwear off to let him splash in the water just to hear him laugh.

Such simple things but it’s these that matter the most because, as any parent will agree with me, your child’s happiness is the more important than anything else I can think of and if my child is happy then I’ve done something right.